Abstract

Aims and objectives The public health approach to end-of-life care has gained recognition over the past decade regarding its contribution to palliative care services. Terms, such as health-promoting palliative care, and compassionate communities, have entered the discourse of palliative care and practice; examples exist in the UK and globally. This scoping study aimed to determine if such initiatives were priorities for hospices in the UK and, if so, provide baseline data on the types of initiatives undertaken.

Methods An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically.

Findings There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

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Introduction

A public health approach to palliative care has gained policy, practice and literature focus, both in the UK and globally. Public health is a broad term focused on improving the health of populations, but the changing health landscape has necessitated new ways of working, beyond traditional public health measures. The importance of engaging communities in their own care has been recognised, and this now occupies a central place in many fields in health.1,2 Community engagement exists on a spectrum that extends from informing at one end to empowerment at the other, distinguished by the extent to which power is shared with the community.3 These principles have resonated for many within palliative care, and examples exist worldwide.4–7 At one end of the spectrum, approaches that work to promote public openness around death, dying and loss can tackle the stigma that can surround these issues. Approaches that focus on empowering people, families and communities allow them to draw on their own resources and community supports to adapt and cope. A range of terms exists to describe these approaches, including a public health approach, health-promoting palliative care and compassionate communities. In the UK, end-of-life care policy documents have recognised the significance of such approaches,8,9 but little research exists in this field. This study aimed to determine whether such public health approaches were a priority for UK palliative care services, and to obtain a baseline of current initiatives.

Methods

An online survey was developed based on current gaps within the literature, highlighted by the authors’ doctoral literature reviews. It consisted of six questions and was piloted before use. Quantitative data included questions on organisational remit and demographics, as well as asking participants to indicate, from a range of responses, the extent that this type of work is a priority, and if any projects were undertaken in this area. Qualitative data was requested by inviting participants to highlight which areas of work they felt were successful and why, as well as providing comments on the role of palliative care services in relation to public health approaches to end-of-life care. Ethical approval was not required as per NHS ethical review guidelines. The University of Edinburgh ethical review process was undertaken, however, confirming the survey as Level 1: ‘no special ethical risk’.

A total of 220 services were contacted, identified via the Help the Hospices Directory.10 This included both independent hospices and palliative care inpatient services, usually attached to hospitals. Five organisations were located in Northern Ireland, 19 in Scotland, 14 in Wales and 182 in England. A link to the survey was emailed directly to the Chief Executive or the generic email if this was unavailable, with a brief overview of the purpose of the study. All responses were anonymous. Quantitative data were collated and analysed using descriptive statistics. Qualitative data were analysed thematically. This was done individually by the investigators in the first instance, with identified themes being brought together and discussed to achieve consensus.

Findings

Of the 220 services contacted, 146 (66%) returns were received over 3 weeks from all four countries in the UK. Sixty per cent of respondents identified public health approaches to end-of-life care as a priority for their service. A further 30.8% noted that such approaches were not currently a priority but could be in the future. Only 7.6% of respondents felt that such practice was not a priority for their service. This was due to a lack of resources, or because it was felt that a public health approach did not fit with the remit of the service. Priority did not appear to be determined by whether or not the service covered a rural, urban or mixed area, or by the range of services provided.

Working with schools was the most common project undertaken by services identified by 73.3% of respondents. This was followed closely by engaging with local media (69.2%). Other examples included: providing public education and awareness events (61.0%); attending community events (59.6%); supporting community dialogue about end-of-life care issues (46.6%); working with faith groups around loss, death, dying and hospice care (44.5%); and engaging with local business on issues related to loss, death, dying and hospice care (32.2%). Respondents were also invited to include additional projects that had not been identified as a specific response option. These included: awareness raising of the hospice and/or cancer; promoting ‘Dying Matters’ week; developing compassionate communities; and fundraising. Fundraising was described in its ability to both raise the profile of hospice within the community but also give ‘people an opportunity to come and talk about death and dying’.

Table 1 identifies which projects respondents felt were most successful. Responses fell across five themes encompassing a range of practices. A number of respondents commented that ‘one approach doesn't work’ and a diversity of approaches was more likely to be successful.

Participants were also asked to comment on the role palliative care services could play in public health approaches to end-of-life care. The majority of responses described the pivotal role that services have due to their expertise in end-of-life care, existing positive relationships with local communities, and opportunities that exist within current service delivery. It was also highlighted that such practice could potentially benefit service delivery by influencing equitable care and challenging stigma related to hospice care. A number of challenges in taking forward such approaches were also acknowledged. These included: a lack of resources; the potential impact on direct service delivery; cultural issues; recent changes to care services; stigma associated with hospice care; and a lack of staff skill, training and resources. It was suggested that a national approach would be required to take this further. Two comments included reservations about a public health approach to death and dying in general, which was deemed to be unachievable or ‘reaching for a rainbow’.

Discussion

This is the first study to demonstrate that public health approaches to end-of-life care are a priority for the majority of palliative care services in the UK. Although this overview illustrates both the range of the approaches used and communities engaged, it also demonstrates that there is a lack of clarity surrounding what constitutes a community engagement initiative per se, and what may be part of fundraising or core service, a finding that has been noted elsewhere.11 For example, responses describing the introduction of the Liverpool Care Pathway into nursing homes illustrate that confusion exists between community engagement initiatives and the community as a site for service delivery. This survey records the important opportunity that events, such as Dying Matters week, offer to meet with local communities, a first step in engagement.

Despite limited published literature in the UK, the results of this study correlate with emerging international literature. The theoretical basis for the public health approach was developed in Australia by Kellehear.12,13 Examples published from India,4 Australia5,7,14,15 and the UK,6 describe the role community engagement has played in both increasing access to services and improving the holistic nature of care.

This study has three limitations. Designed as a scoping survey, the tool was only piloted and did not undergo reliability and validity testing, meaning more in-depth conclusions are not possible. The sample of service providers was taken from the 2009/2010 Help the Hospices Directory, meaning some inpatient units were included who may not have the remit to initiate such services, and that the list of services may be out of date. Owing to the anonymous nature of the survey, the demographics of non-responders are not available to determine their characteristics and significant differences.

This study has five important implications. The challenges highlighted demonstrate the need for innovative practice and skills to be shared between services, and for national guidance or toolkits to support services interested in this work. National campaigns, such as Dying Matters, have provided resources and opportunities to hold events, and further work like this should be supported. Engaging with communities requires local knowledge, however, and involves more than simple awareness raising. Genuine engagement with communities requires open and honest dialogue and working together in partnership. It is this collaborative process that can deliver real improvements in equitable access, services and society's attitude to death and dying.

This is an under-researched area, and conceptual clarity of what the approach comprises and does not, is essential. A series of case studies and detailed evaluations of these initiatives from various perspectives are needed to underpin future work.

Conclusion

Community engagement in palliative care is a priority for services in the UK, and a diverse range of initiatives are taking place currently. For this field to develop further, research and guidance is needed to support services to work in partnership with the communities.
I believe that [this approach] presents an opportunity for hospices to re-engage with voluntary community-based support and therefore represents a return to its ‘roots’ i.e. citizens developing their own capacity to care [Quotation from respondent]

Acknowledgments

The authors would like to thank Professor Scott Murray for his support in reading earlier drafts of this paper, and the volunteers at both St Joseph's Hospice and Strathcarron Hospice for their help in putting together a database.

Footnotes

Contributors The idea for this scoping study developed due to a lack of literature in this area, identified by both Sally Paul and Libby Sallnow as part of their PhD studies. A survey, originally designed by Sally Paul as part of her initial PhD research design, was therefore adapted and developed by both authors to be used for the purpose of the study. Both Sally Paul and Libby Sallnow played an equal role in conducting the research, processing the findings and writing this short report. Due to this, both authors are responsible for the overall content of the report and can act as guarantors.

Funding Sally Paul is carrying out a PhD exploring work between hospices and schools, funded by Strathcarron Hospice, Stirlingshire. Libby Sallnow is carrying out a PhD in community engagement in end-of-life care, funded by St Joseph's Hospice, London. Both are registered at the University of Edinburgh.

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